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        New Message Board Archives >> 2006 General Board Posts >> Oklahoma Clusterheads!
        
(Message started by: DJ on Sep 26^th, 2006, 10:44pm)

Title: Oklahoma Clusterheads!
Post by DJ on Sep 26^th, 2006, 10:44pm

All you clusterheads from Oklahoma... get ahold of me ASAP! I just received a note from a reporter from the NBC affilliate in Oklahoma City (KFOR) who is doing a story on "suicide headaches".

She would like to interview people from this site who live in Oklahoma for her story.

Send me an email or PM and I will pass on her contact info...

DJ

Title: Re: Oklahoma Clusterheads!
Post by chewy on Sep 26^th, 2006, 10:51pm

Get on it Oakies! This is your big chance to help thousands of suffers.

Who knows? This could be the media break that spreads like a Las Vegas rash.

(And I know about Las Vegas rashes)

Title: Re: Oklahoma Clusterheads!
Post by TxBasslady on Sep 27^th, 2006, 3:52am

TTT

Title: Re: Oklahoma Clusterheads!
Post by LadyElaine1 on Sep 27^th, 2006, 7:25am

I hope you get lots of PMs DJ ! :)

Title: Re: Oklahoma Clusterheads!
Post by Melissa on Sep 27^th, 2006, 9:29am

Doesn't Gator & KOP live in OK?? My mind goings blank right now.

Title: Re: Oklahoma Clusterheads!
Post by The mad viking on Sep 27^th, 2006, 11:06am

This is importent and a golden oportunity

WAKE UP FOLKS

Svenn

Title: Re: Oklahoma Clusterheads!
Post by Peppermint on Sep 27^th, 2006, 11:09am

Deej,

I left a message for Donna D. ... KOP lives in Oklahoma.
So does Cris (hopefully he's reachable), and Sue Ellen, whom I'll try to contact directly. Lee also lives out there. I forget who else but they had a few meet and greets, and possibly KOP (Steve) will be able to reach everyone.

What's the deadline?

Title: Re: Oklahoma Clusterheads!
Post by aprilbee on Sep 27^th, 2006, 11:48am

DJ,

I live in Oklahoma City very close to the KFOR studios! What information do you need from me? I'm even in cycle right now so that's a bonus huh? I tried to PM you, but it didn't go through...my email address is aprilbee28@yahoo.com just let me know what you need!!!

Title: Re: Oklahoma Clusterheads!
Post by Gator on Sep 27^th, 2006, 1:02pm

Yee Haw! It's about time. I wrote these people (and all the other local stations) about doing a story on ch back in July 04 and never heard anything back from them. Channel 9 wrote back saying they'd discuss the possibility of a story, but it never went any further than that.

At any rate, I'm happy to see this opportunity to get the word out there and I'm definitely interested!!!

You got an e-mail and a PM from me, DJ.

Title: Re: Oklahoma Clusterheads!
Post by Tiannia on Sep 27^th, 2006, 2:03pm

Now not all us Vegans spread that rash....

Besides havn't you heard?
"What happens in Vegas stays in Vegas. "

That is so awesome. Just maybe other stations will get thier crap together and jump on board as well.

Title: Re: Oklahoma Clusterheads!
Post by Fredmyyster on Sep 27^th, 2006, 3:51pm

Thats killer ! Last time i was in OKC i hit Remington ( broke even ) and had a ( or tried to ) Big Ed Hamburger... that thing was sick !
Hope ya'll git the word out and the word is OUCH !

Title: Re: Oklahoma Clusterheads!
Post by Karla on Sep 27^th, 2006, 11:47pm

bump

Title: Re: Oklahoma Clusterheads!
Post by Fredmyyster on Sep 28^th, 2006, 5:29am

Just to clear this up, i meant OUCH as in ow ow ow, something we all do when the head throbs.... not the group....

Title: Re: Oklahoma Clusterheads!
Post by unsolved1 on Sep 28^th, 2006, 6:21pm

Of course, the rest of us want links to the story when available. :)

UNsolved

Go people ... GO !!

Title: Re: Oklahoma Clusterheads!
Post by aprilbee on Sep 29^th, 2006, 9:02am

I had an interview set up for 10/5 and they cancelled it saying there had been an overwhelming response! Great job Okies! I can't wait to see the story....good luck! ;;D

Title: Re: Oklahoma Clusterheads!
Post by _Lee_ on Sep 30^th, 2006, 10:29pm

I would love to!

Title: Re: Oklahoma Clusterheads!
Post by JenniferD on Oct 1^st, 2006, 7:07pm

this is awesome! Way to go all!!!!!!!!!!!!!!!!!

Title: Re: Oklahoma Clusterheads!
Post by Jasmyn on Oct 2^nd, 2006, 1:02pm

Wow! Great Stuff! [smiley=thumb.gif]

Title: Re: Oklahoma Clusterheads!
Post by vig on Oct 3^rd, 2006, 7:44pm

way to go people!!!!!

keep it up

Title: Re: Oklahoma Clusterheads!
Post by Gator on Oct 5^th, 2006, 7:07pm

Well, I had my interview this morning at 11:00. The reporter said it went well, but with the extra hits I'm getting lately and me not sleeping at all last night on top of the problems with the grand baby, I'm not sure I was at my best. Anyways...

She asked questions about clusters and the level of pain and how we deal with such intense pain day in and day out and still function.

Discussed the suicide aspect of "Suicide Headaches" and how real the thought of suicide can be when a person is in such repetative extreme pain.

Talked a bit about clusterheadaches.com and ouch and how ouch was born from ch.com.

She asked the question of how ch compares to other headaches, specifically migraine. I gave migraines their due, but explained that the intensity of a ch was what made them so much worse.

They got some footage of my O2 rig (welder's O2). I explained how I couldn't afford the medical stuff, but that welder's O2 was the same pure oxygen. They wanted some footage of me using the O2 rig.

Also talked a bit about trex injections and how expensive they are and some footage of how it's used, right up to pushing the plunger. No trex was actually used.

They wanted a look at the medicine chest. I explained that I am not currently taking a preventative as none have worked up to this point.

All in all, I guess it went okay. I can't wait to see what they actually use from my interview and everyone else's.

The report will air sometime around November 6 - 9 on the 6:00pm News on Channel 4. I asked if they could get me a copy of the footage or the report, but she said their editor would not allow that. She did say we are free to record what is aired and use that.

I want to take this time to thank all you Okies that responded to the mass e-mail OUCH sent out. The reporter said she was overwhelmed with volunteers. I'm proud of all of you for stepping up.

Title: Re: Oklahoma Clusterheads!
Post by Jonny on Oct 5^th, 2006, 7:24pm

Way to go, Bro!!!! [smiley=headbanger.gif] [smiley=bigguns.gif] [smiley=headbanger.gif]

Title: Re: Oklahoma Clusterheads!
Post by Gator on Oct 5^th, 2006, 8:44pm

Oh and I just HAVE to brag on my doc.

The reporter asked several doctors for an interview about clusters and 4 or 5 turned her down. Only one, Dr. Marc Lenaerts from the OU Medical Center Neurology Department (my neuro), agreed to be interviewed.

I have an appointment with him on the 28th and you can be sure he'll get a big thanks from me.

Title: Re: Oklahoma Clusterheads!
Post by Jonny on Oct 5^th, 2006, 8:55pm

on 10/05/06 at 20:44:29, Gator wrote:

I have an appointment with him on the 28th and you can be sure he'll get a big thanks from us.

.................................... ;;D

Title: Re: Oklahoma Clusterheads!
Post by aprilbee on Oct 6^th, 2006, 10:28am

on 10/05/06 at 20:44:29, Gator wrote:

that's my doc too! love him love him love him! great job Mike!

Title: Re: Oklahoma Clusterheads!
Post by _Lee_ on Oct 8^th, 2006, 9:48am

DJ -
I am Lee's wife. thought you guys might want to know that Lee died last Friday night. Shot himself in the temple with a pistol. I thought he was doing better - he had a good day on Friday.
Sheila Moore

Title: Re: Oklahoma Clusterheads!
Post by Gator on Oct 10^th, 2006, 6:30pm

I attended the memorial service for Lee this afternoon. Of course it rained to keep pace with the mood of the day. It felt strange to attend the funeral of someone I had never met face to face, yet it felt right that I should be there to say goodbye as well. I don't know if that makes any sense. Of course, you know who also attended the service. Luckily, he struck right at the very end so I was able to ride it out until the conclusion and then slip out to the truck for a shot and get the attack under control before meeting Sheila. I passed on our sympathies for the loss of her husband. She was very touched by the gesture. She spoke briefly about he loved this place because people here understand.

One of the most moving parts of the service was a poem by Linda Ellis that the speaker read. A very thoughtful and soul searching poem that I must share with you all.

Quote:

The Dash
by Linda Ellis

I read of a man who stood to speak
At the funeral of his friend.
He referred to the dates on her tombstone
From the beginning to the end.

He noted that first came the date of her birth
And spoke the following date with tears,
But he said that what mattered most of all
Was the dash between those years.

For that dash represents all the time
That she spent alive on earth.
And now only those who loved her
Know what that little line is worth.

For it matters not, how much we own;
The cars, the house, the cash.
What matters is how we live and love
And how we spend our dash.

So think about this long and hard.
Are there things you'd like to change?
For you never know how much time is left.
That can still be rearranged.

If we could just slow down enough
To consider what's true and real,
And always try to understand
The way other people feel.

And be less quick to anger,
And show appreciation more
And love the people in our lives
Like we've never loved before.

If we treat each other with respect,
And more often wear a smile,
Remembering that this special dash
Might only last a little while.

So, when your eulogy is being read
With your life's actions to rehash
Would you be proud of the things they say
About how you spent your dash?

Of all the things I have done in my life, this was a new experience for me. One I hope never to have to repeat. Not that I wouldn't, mind you, just that I do not want to lose another member of this family. We need to support each other and all the new people coming in as well and those just passing through looking for a few bits of information to help them survive this horror. We are all we have.

I'll quit before I break out into a sermon and I will close this with one final question.

How are you spending your dash?

Title: Re: Oklahoma Clusterheads!
Post by Lizzie2 on Oct 10^th, 2006, 6:35pm

Gator - Wow...that was beautiful. Thank you for posting that and also for passing on our sympathies for Sheila. That was very kindhearted of you to go to Lee's memorial service today, even though you'd never met him.

Hugz,
Carrie

Title: Re: Oklahoma Clusterheads!
Post by Gator on Oct 11^th, 2006, 2:26am

Thanks Carrie. The service was more a celebration of his life than a mourning of his passing. The final song they played (one of Lee's favorites) was Freebird (Lynrd Skynrd).

Sheila appears to be a very strong and positive person. We discussed the story being done on cluster headaches in Oklahoma and how Lee wanted to be a part of it. She said she would like to do something for the cause, so she's going to contact the reporter and answer any questions she may have. You can't help but admire and stand in awe of the strength that will take.

Title: Re: Oklahoma Clusterheads!
Post by jon019 on Oct 11^th, 2006, 2:57am

Awesome Mike. Thanks for being there, thanks for relating the wonderful poem. I am sitting here feeling frustrated and lost, not knowing what to do. You did, and I believe you were there for all of us and I truly appreciate it.

Regards,

Jon

Title: Re: Oklahoma Clusterheads!
Post by davyp on Oct 11^th, 2006, 3:48am

Thank you Gator,

I read this poem at my Nana`s funeral a few weeks ago after watching the dash movie, it was either posted here or on OUCHuk but i thought i would post it as i think it is just fantastic.

http://www.thedashpoemmovie.com/

Again thank you.

Dape

Title: Re: Oklahoma Clusterheads!
Post by roy21302 on Oct 11^th, 2006, 9:43am

Gator and Dape, thanks for posting that, its beautiful, it really hit the spot for me, may God bless Lee's family and keep them safe Roy

Title: Re: Oklahoma Clusterheads!
Post by Pinkfloyd on Oct 11^th, 2006, 9:57am

Thank you very much Mike, for attending and for sticking around after the cluster attack to speak with Sheila.

Bobw

Title: Re: Oklahoma Clusterheads!
Post by Margi on Oct 11^th, 2006, 10:06am

Wow, Mike - thanks so much for going, that took strength from you, too. We couldn't ask for a better ambassador to be there for all of us.

Hugs,
Margi

Title: Re: Oklahoma Clusterheads!
Post by georgej on Oct 11^th, 2006, 10:43am

Thank you, Mike, from all of us who couldn't be there.

Best,

George

Title: Re: Oklahoma Clusterheads!
Post by pattik on Oct 11^th, 2006, 5:17pm

Thanks from me too, Mike. I'm saving that poem.

Patti

Title: Re: Oklahoma Clusterheads!
Post by boonie on Oct 11^th, 2006, 6:51pm

Thanks Gator I am glad you did that

Jim

Title: Re: Oklahoma Clusterheads!
Post by Gator on Oct 12^th, 2006, 2:14pm

Update: The story will air Monday, November 6 at 6pm on Oklahoma City Channel 4.

Can someone with a decent signal, please tape this for me. All I get out where I live is what I can pick up on the antenna and channel 4 is a bit fuzzy these days.

Thanks,

Mike

Title: Re: Oklahoma Clusterheads!
Post by Tiannia on Oct 12^th, 2006, 3:38pm

on 10/11/06 at 02:26:52, Gator wrote:

Thanks Carrie. The service was more a celebration of his life than a mourning of his passing. The final song they played (one of Lee's favorites) was Freebird (Lynrd Skynrd).

Sheila appears to be a very strong and positive person. We discussed the story being done on cluster headaches in Oklahoma and how Lee wanted to be a part of it. She said she would like to do something for the cause, so she's going to contact the reporter and answer any questions she may have. You can't help but admire and stand in awe of the strength that will take.

Thank you Mike.

Sheila contacting the reporter might out an even more personal and potent aspect on her story considering the circumstances.

Title: Re: Oklahoma Clusterheads!
Post by brewcrew on Oct 12^th, 2006, 3:44pm

on 10/12/06 at 14:14:43, Gator wrote:

If you call the station and use your sweetest, most diplomatic voice, they may just send you one.

Title: Re: Oklahoma Clusterheads!
Post by tanner on Oct 12^th, 2006, 3:51pm

Thanks Buddy!!!

Tim

Title: Re: Oklahoma Clusterheads!
Post by Jonny on Oct 12^th, 2006, 9:04pm

on 10/12/06 at 14:14:43, Gator wrote:

Update: The story will air Monday, November 6 at 6pm on Oklahoma City Channel 4.

Maybe they will have the video on their website under "health" like lots of channels do?

Lets hope!!

Title: Re: Oklahoma Clusterheads!
Post by Jimi on Oct 12^th, 2006, 11:24pm

That was a good thing that you did Mike. I am proud of you. Thanks for sharing.